Most of what you’ll read here is life and fun, with episodes from my past, amusing and serious. But I have an unwelcome stranger lodged in my brain, as you’ll find if you explore my stories. Our destinies are interlocked, but its deadly presence reminds me every minute that each day of life is a miracle. This is my space to reflect on life, and an interactive area where we can share our experiences freely. Without you, this blog has no reason for existence. Carpe Diem!

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Sunday, June 16, 2013

"I am Officially Very Poorly"

Sunday, 16 June, 2013. 10:30 AM.

"I don't really have that much to say for a weekly medical roundup on WHAT'S NEW!," I said to Tracey as we were sitting by the fire a few minutes ago. "I didn't [yet] have a strong seizure post-Avastin and things have kinda levelled out even though I'm getting a few minor seizures every day."

"In fact, I'm about to have one right now." I could feel the familiar clamping of the entire right arm beginning. Then the fingers started to pulsate visibly and the hand curled and uncurled like the talon of a bird of prey, and the thumb in particular reacted. It went on for about a minute while I sat quietly. Tracey watched carefully as she always does. There's absolutely nothing she can do, and she's seen it all before — way too many times. She has the under-the-tongue treatment (Rivotril) ready if I want it.

After a few exaggerated convulsions of the hand like those of a newly-shot bird lying on the ground, it finally stopped. Because I had the laptop open in front of me, I turned to the news page to fill in recovery time.

"Some news headlines are very odd," I began to say, except that it came out, "Saa-smm-umm-umm-heh-lis-are-lines-some-verr-very-[pause]some-odd [pause] I-not-try-yy-tal-talk-a-while..." I was thinking the words with utter clarity, but the neuron(?)-panic which had caused the seizure in the first place had unbeknownst to me affected the vocal region, and the words were utterly scrambled. I tried again, but the results were no better. "I... stop." This is the tumour making its presence felt. The actual seizure, as I've said many times recently, doesn't cause the malfunction. It's just a symptom. A short seizure of a couple of minutes isn't painful. It's inconvenient and usually arresting, though once or twice I've just kept typing during a minor one such as today's. If it goes on longer than that, it can be tiring for, say, the fingers, which sadly can't switch off the pulsations even when they demand it. The "STOP" messages back to the brain just aren't getting through. If Tracey hasn't trimmed the nails for a couple of weeks, they can dig into the flesh of the palms when fingers curl and uncurl, although we're aware of that and usually keep them short. The attack on the thumb may not seem significant, but it is. Humans and their ancestors didn't advance without the capacity to use an opposable thumb. Long after the seizure has passed, an attempt to pick up a knife fails. Or any other instrument at all, like the controller for the electric lift-recliner chair I now have. Even though there's strength in the arm, it's useless. I can't even pull up the right side of my underpants with the right hand; the band just slips uselessly through the pathetically weak grip.

It's getting weaker after each seizure, and being able to hold that right grip on the walker is critical for mobility because the right leg is damn near useless. After a few minutes, I tried to speak again. This time, there are whole words and in the right order, though a bit lispy and faintly slurred. My eyesight is still blurred. "What I'm afraid of," Tracey said, "is that after a seizure, very soon, you won't be able to speak at all, and I won't know if you're there or not." "You could put a keyboard in front of me. I may still be able to type." "And if your eyesight goes as well?" That could be difficult. Typing one-handed after a lifetime of using two has depended very much on seeing the keyboard. I know when I get up from this chair I will really struggle to walk post-seizure, and I need to pee. I want to walk. I need to keep walking! Ah. Another seizure has begun. Here we go again. Bloody hell, as Ron Weasley says... but I'm keeping on typing.

It's gone to my neck this time. The right side of my face feels hot. And I still need to get to the bathroom.

[Later: it's OK, sort of. We solved it. You don't need to know.]

____"I am Officially Very Poorly" is the statement Iain Banks made in this remarkable interview. He died of cancer at 58 just last Sunday. If it weren't for the fact that he was a brilliant writer, engaging, sociable, erudite and unTwittered, he says nearly all the things I would have if I were a brilliant writer, engaging, sociable and erudite. Had I been unTwittered I would never have known of this interview, for which I thank the irrepressible and excellent Mr Julius Flywheel [@JuliusFlywheel]

On the use of the term "poorly" and its opposite, "well", please see this comment.

10 comments:

We thought of Iain Banks when you posted "The Wedding Advice I wish we'd had" last month. We'd loved how in his public statement he mentioned asking Adele his partner to "do him the honour of becoming his widow". It just delighted us. He had a magical way with words. In fact his words played a part in our own wedding .. but that's another story :)

Denis, you know perfectly well you ARE engaging, witty, sociable and all that other good stuff - and a wonderful writer too (I don't say "brilliant" because it's a word I save for only the very few.) And these are the things we shall remember about you, along with your essential goodness and decency, and (for some of us) your remarkable teaching skills. Of course I absolutely HATE you having to suffer like this but it makes for compelling reading because we all feel at least a little bit involved and "with" you and Tracey on this hard journey. You have never shut us out and I find that wonderful. Bob and I went to a chamber music recital yesterday in a very beautiful church - Bach, Mozart and Handel - I found myself thinking of you. I also found myself thinking that while Mozart would undoubtedly have approved the setting and the music he would have thought us (120 or so in the audience) a very drab and ill-dressed lot!

Meant to say, the expression "poorly" is one I haven't heard for years, not since my basically British childhood. I remember there was a radio character who used to say "I'm feeling proper poorly" in a north country accent, but can't quite recall who it was. Something from the fifties.

I can only thank you for your kind comments, which are too extravagant in terms of praise but hell, I'll take what I can get!

On the term "poorly" which was well-known in my childhood and for readers of nineteenth-century prose, I am reminded of the opposite as used by my bush relatives on my Dad's side. Mum came from a more citified upbringing, if you can take 20 miles from Brisbane as being urban in the 1940s.

She was very pleased when my old uncles would remark, "You're looking very well these days, Joan." That was until she found they applied the same term to the fattest of the Jersey milkers.

Looking very well seemed to lose its attraction, although she was very well even after producing four children and was, shall we say, appropriately matronly.

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Former historian in Asian studies, comparative religions, movie-maker and observer of the world as we have changed it. I’m now dealing with a GBM (4): the most aggressive form of brain tumour. It should have got me months/years ago, but we’ve fought it and I’m still here! I aim to use this experience to try to illuminate life as well as demystify the journey. Twitter: @deniswright